Home is the place where, when you have to go there, they have to take you in.
Here is how I began my 30th birthday: everyone in my host family solemnly gave me a happy birthday handshake. Then I got a special birthday breakfast the mom had gotten up early to make me: mac & cheese with ground beef! Ahahaha, fantastic. I won't forget that soon.
Here is my big news: I'm going home earlier than I expected, at the end of this month. Mostly because of my ongoing health nonsense, though how miserable I've been here made a really hard decision easier. It's so hard not to feel like a failure for giving up, but I've been feeling worse and worse since I got here, away from a lot of the small-but-significant things I rely on to make me functional physically, and I just want to go home and start treatment and maybe not feel like crap all the time. Plus the NGO has been really supportive and awesome and I'll get to continue my work from home, which is basically perfect. I am really really really happy to be going back to my life.
(Other reasons I'm glad to be going home: the ongoing religious violence here -- last month 50 people were attacked with machetes in the street! -- and all the fatalities from landslides they've been having. Somewhere safer is sounding very nice.)
Let's talk about health stuff! (Ha, wow, this got really verbose and all over the place, apologies. I've been writing it in my head for like three months, you'd think it would be more coherent!)
After I got the ankylosing spondylitis diagnosis in February, I was pretty distraught for like a month. But you can only function at high levels of distraught...ness for so long before your distraught muscle gets exhausted and you just kind of have to get on with it, I guess. I've been working on thinking about the good things that have come out of being diagnosed:
And a lot of you guys have been really amazingly helpful and supportive as I've been dealing with all this, and that's another wonderful thing for my list. A++, way to be awesome.
More about Indonesia: yesterday I saw a fruit I'd never seen before and bought it immediately. It's snake fruit, or salak, scaly on the outside, with garlic-looking cloves on the inside, crunchy and sweet-tart like a tropical apple.
The differences in flora and fauna are the most exciting part of being here, reminds me I've actually gone somewhere really distant and different, instead of just the world motorcycle exhaust headquarters. There are butterflies bigger than my hand everywhere. The geckos are so different than our Floridian kind. A gecko that chirps like a bird. A jet black one with a fluorescent stripe down its back, fading from yellow to indigo. A slightly bigger lizard that looks and moves just like a snake, until you see its little legs sticking out awkwardly, like a living missing link. Some kind of dark blue swallow-winged bird that darts like a bat. (Trying to figure out what it is has led me down an exciting path of exotic bird names: Claret-breasted Fruit-dove! Moluccan Scrubfowl! Ashy Flowerpecker!) (Dirty.) There's a Southern Cassowary that stalks around behind the fence at one of the military complexes in town. I really am on the other side of the world.
Here is my big news: I'm going home earlier than I expected, at the end of this month. Mostly because of my ongoing health nonsense, though how miserable I've been here made a really hard decision easier. It's so hard not to feel like a failure for giving up, but I've been feeling worse and worse since I got here, away from a lot of the small-but-significant things I rely on to make me functional physically, and I just want to go home and start treatment and maybe not feel like crap all the time. Plus the NGO has been really supportive and awesome and I'll get to continue my work from home, which is basically perfect. I am really really really happy to be going back to my life.
(Other reasons I'm glad to be going home: the ongoing religious violence here -- last month 50 people were attacked with machetes in the street! -- and all the fatalities from landslides they've been having. Somewhere safer is sounding very nice.)
Let's talk about health stuff! (Ha, wow, this got really verbose and all over the place, apologies. I've been writing it in my head for like three months, you'd think it would be more coherent!)
After I got the ankylosing spondylitis diagnosis in February, I was pretty distraught for like a month. But you can only function at high levels of distraught...ness for so long before your distraught muscle gets exhausted and you just kind of have to get on with it, I guess. I've been working on thinking about the good things that have come out of being diagnosed:
- The most obvious, of course, is the realization that I have a genetic condition that means I grow extra bone as my spine slowly fuses: omg I'm Marrow from X-Men.
- Unless I'm just a cylon?
- Being diagnosed has been amazingly eye opening in understanding what's going on with me, not only in terms of the really nasty acute problems that sent me to the rheumatologist in the first place (debilitating sacroiliac joint pain, ER-visit-inducing eye inflammations), but lots of other aches and pains and problems I didn't realize were connected. This will sound ridiculous, but I honestly didn't realize how much day-to-day pain I was in, or that it wasn't normal. (Like, the rheumatologist kept asking if my lower back was stiff in the morning and I -- who even knew that was a warning sign for AS! -- kept being like yeah, it's super stiff, but that's just because I slept wrong or something, it's not important. Haha. Dummy.)
- The good news is, now that I'm paying attention to my back, my elbows, my neck, my ankles, I can start to at least work on pain management instead of ignoring it and powering through haha I sure am my father's daughter. The bad news is that everything I thought was just a normal part of aging is actually a scary symptom. My neck hurts: is it fusing?? My back is a mess every morning: is the disease progressing up my spine?? (well, yes) Ugh.
- It's been really great to have access to online communities that have good suggestions about things like how to deal with how incredibly stiff I get on long plane flights. (Or short plane flights. Or every day life. Instead of Marrow, maybe I'm the Tin Man.)
- Also great to suddenly get an awareness of the cycle of flaring that comes along with autoimmune conditions: when part of me hurts, generally a lot of other parts of me hurt, which I'd noticed but thought was observation bias. Also astounding to me was the MASSIVE MASSIVE FLARE I went into right after being diagnosed, when I was in emotional chaos and also oh yeah the middle of midterms. Mind-body connection, what up! So...... working on handling my stress in a way that doesn't wipe me out physically is on my to do list.
- One of the most important things: starting to unravel the massive guilt complex I've been carrying around about my health. I've been through... 4?... major courses of physical therapy for my SI problems in the past 7 years or so. Most of my physical therapists have been amazing, and have done far far more than any doctor I've been to in helping me figure out what was going on with me, and how to deal with it. (Fuck youuuu, dismissive orthopedist I went to twice when I was 23 and could barely walk, and who -- without examining me! -- said I didn't have hip pain, I just had a weak back and needed to do some exercises.)
However all their explanations and solutions put the cause of my problems and their cure squarely in my camp. My hips hurt because: I lean too far forward when I sit; walk with bad form; have poor core strength; wear the wrong shoes; carry a bag that's too heavy; stand cockeyed; sleep wrong; etc etc etc. (I haven't crossed my legs in 7 years! And oh, the money I've spent on arch support shoe inserts.) I have changed so many many things in my life to try to fix myself while instead I've just gotten worse and worse, and felt shitty and guilty the whole way through. (If only I were doing more leg lifts, I wouldn't be unable to walk today!) The revelation that it's not up to whether or not I'm exercising enough -- my own immune system is attacking me, and it would happen no matter what I do -- has been kind of earthshattering. It's taking a while to internalize. (Of course all those things *do*, or can, contribute to my symptoms, and it's great to know what to do to help manage them. But it's not my fault I'm hurting.) - My incredibly soothing most recent PT -- who's been amazing to the max, both medically and emotionally as I was dealing with the diagnosis -- has helped a lot by telling me how great things like my core strength actually are. Guys! My core strength is good!!
- Yoga, again, maybe? My last PT said I could never do yoga ever again (a lot of the movements are exactly the kind of thing that will throw my SI joints instantly out of place). My current PT says he thinks maybe I can, if I can find someone smart to work with. I'd really like that a lot, tho' I'm scared about sending myself into a bad flare.
- To a point, the way the disease works means the more I move around, the better I feel, which I think is far better than the opposite. HULK NO LIKE TO SIT STILL.
- A really good medical team: as discussed, my PT is amazing. I have a sports doctor who's amazing. I have an ophthalmologist who really knows her stuff. My rheumatologist.... sucks a lot, actually, but I'm going to figure out how to get a new one. (ugh, how do I do that?) So so lucky to have most of these people in my wheelhouse, though. And they're all based on campus, which is ultra convenient.
- PROOF: my last CT scan showed lesions lesions lesions all over my left SI joint -- the one that's been giving me pain for years -- from all that inflammation, as well as a weird gap in my right SI joint -- the one that was so stalwart for so many years and then last November joined the party with such a bang I haven't had a good night's sleep since. After being brushed off by so many medical professionals it was amazing to SEE what's been hurting me all along like that. And now they have to pay attention. Ditto with the bloodwork that showed I have the AS gene.
(Do you guys know much about the sacroiliac joints? Probably not, no one does. They're the joints that connects your pelvis to your spine, that handle all the weight-shifting from the upper to lower half of your body, as well as lifting your legs and stuff like that. Here, have a diagram.) In normal people it moves maybe a couple of millimeters -- they used to think it didn't move at all. Mine get inflamed from being attacked by my immune system, and hypermobile so they slip out of place all. the. time. It's gross. And so painful.) - Medicine: I want it. I am still pretty freaked out by the side effects of the immunosuppressants that get used to treat this (MS, cancer, augh), but much much more excited about taking them than I was. This is because (A) I've done enough research now to know that they're a way better option than everything else out there, and (B) I've been reading success stories and oh god oh god I want it to work for me. For some people it helps so much with pain and fatigue. (Even more appealing since I'm handling all this without any pain meds -- my rheumatologist was shocked -- because they shred my stomach.) I can't imagine handling grad school -- handling life -- without the huge amount of time and energy and thought I have to expend into just feeling halfway decent. Or rather, I can imagine, and I want it so bad.
And a lot of you guys have been really amazingly helpful and supportive as I've been dealing with all this, and that's another wonderful thing for my list. A++, way to be awesome.
More about Indonesia: yesterday I saw a fruit I'd never seen before and bought it immediately. It's snake fruit, or salak, scaly on the outside, with garlic-looking cloves on the inside, crunchy and sweet-tart like a tropical apple.
The differences in flora and fauna are the most exciting part of being here, reminds me I've actually gone somewhere really distant and different, instead of just the world motorcycle exhaust headquarters. There are butterflies bigger than my hand everywhere. The geckos are so different than our Floridian kind. A gecko that chirps like a bird. A jet black one with a fluorescent stripe down its back, fading from yellow to indigo. A slightly bigger lizard that looks and moves just like a snake, until you see its little legs sticking out awkwardly, like a living missing link. Some kind of dark blue swallow-winged bird that darts like a bat. (Trying to figure out what it is has led me down an exciting path of exotic bird names: Claret-breasted Fruit-dove! Moluccan Scrubfowl! Ashy Flowerpecker!) (Dirty.) There's a Southern Cassowary that stalks around behind the fence at one of the military complexes in town. I really am on the other side of the world.